
Gould Syndrome Foundation
Research, advocacy and support for families of children diagnosed with COL4A1 and COL4A2 variants, the condition Callie had. Answers for the next family start here.
About the foundation2nd annual · Sunday, December 20, 2026
Come run/walk with us to celebrate Callie's second birthday. We will be raising money in Callie's memory to support both COL4A1 research and the Stony Brook Children's palliative care team who cared for her.
Registration is a $25 donation. Donations go to Callie's causes.
Callie's story
“Callie will write her own story.”
What her doctors told us in the PICU, January 2025
Callie was born on December 22, 2024, and from the moment she entered the world, she showed us what true strength and courage looked like. Just days later, we celebrated our first Christmas together as a family of four. We had no idea how much our lives were about to change.
Weeks later, genetic testing revealed that Callie had an extremely rare mutation in the COL4A1 gene. Because so little was known about how her particular mutation would affect her, we were told that no one could predict exactly what her future would look like. We were simply told, “Callie will write her own story.”
And she did.
Read Callie's full storyWhere the money goes

Research, advocacy and support for families of children diagnosed with COL4A1 and COL4A2 variants, the condition Callie had. Answers for the next family start here.
About the foundation
The team who helped us fill Callie's final days with warmth, comfort and love, and who walk beside other families through the hardest moments imaginable.
About the team$26,341raised for these two causes last year.
From our front door, through Stony Brook Village and back up Christian Ave to finish where we started.
View the run route on StravaAn easier, stroller-friendly loop for families, kids and anyone who wants to take it slow.
View the walk route on StravaYear one
FAQ
Of course! The more the merrier. The walk is mainly on sidewalks.
Park along Blinkerlight Road.
We understand it's December, so be prepared to bundle up! If conditions aren't safe, we'll email everyone registered the day before.
Yes. Donate from anywhere, or run your own 5K that weekend and share it with us.